teen with internal neck hemangioma

[jackiem]

Hi I am new to this site, but I pray this will be of help to our family. My daughter is a 15 year old, who over six months ago was dx: with a 6-8cm long internal hemangioma in her neck. The only time anyone can notice anything is when the the mass swells. The skin is not discolored at all. It is under the muscle. The doctors at the children's hospital say this is unusual and we have been watching it since June 2009. In April 2009 she had Mono. So initially, when she complained about her neck, her pedatrician thought it was due to swollen lymph nodes. The problem is it swells and hurts really bad and the pain is getting worse and lasts longer. We just recently had another ultrasound and they do not think it has grown or shrunk. The doctor suggested possibly using a steroid ( my daughter said absolutely not) or a beta blocker. Where do we go from here? She also has Chiari Malformation type 1(which is why she had the MRI that showed the mass) and we are treating those symptoms and she has not had surgery. If anyone, has any suggestions, I'd love to hear from you. Thanks.

[missy]

Where are you located? What treatment is being used for chiari?

Is she being treated for pain at all? That must hurt like the dickens!!

Missy

[jackiem]

Hi Missy-She has been given tylenol #3 to use as needed for both the hemangioma and the bad headaches. For the Chiari we are using neurotin to help with the every day headache, which she has had the headache for over a year now. We are located in southern Illinois and doctor in St. Louis, MO. We have also been to a neurosurgeon in Chicago.

[nickbar]

She is 15 years old and they have diagnosed this as a hemangioma? I am concerned. Please email me. I would highly recommend getting another opinion and I can help get you to the specialists.

[jackiem]

Corinne- Thank you for your offer to help. I did email you with more information. If you didn't receive the email, please let me know.